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Old Mon Jun 27, 2011, 03:08 PM
BerryP BerryP is offline
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Join Date: May 2011
Location: Chester, England
Posts: 33
Being treated for MDS in UK

Hi, I can tell you it is perfectly normal in the UK to wait six weeks for Bone marrow biopsy results. I have had two done and both took six weeks cos they did cytogenetics as well. Think they had to send to Leeds for it to be done. The staging (basically how severe) also involves testing how quickly his body makes red blood cells. I have hypo MDS now when previously my diagnosis was Severe Aplastic Anemia, and the different between the two seems to be a chronosome defect which has occurred as a result of the disease. Your dad may have hyper or hypo MDS, and you should ask the consultant what chronosome or gene is affected. You should also be given a staging, low, medium or high risk MDS and some blood test results so that you can keep track of how he is doing. I know these things are a big shock, my kids were really shaken by it, but they can give him red cells to stave off the fatigue and other meds. He should definetely be given mouth wash for those ulcers. They give me the stuff all the time, and anti virals and anti bacterials may help as well. Its a pretty steep learning curve and there will be good and bad days but there are a few people from the UK here and most know a lot more than me so don't be afraid to ask.
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